Wednesday, October 27, 2010

This time around I have a mix of different emotions. Almost two weeks after my daughter's birth I am still in amazement that this happened to us again. I am less worried about the stuff I had originally been fixated on with my son and more worried about things like;

Will I be able to wear her in a sling?

Do we need to get a double stroller? (the original plan was to wear my daughter until my son was old enough to walk independent of the stroller)

Will her recovery be as smooth as our sons?

If I have a third child will this happen again?

Anytime I hear of a new parent-to-be finding out that they are expecting a clubbed footed baby I always say that of any handicap, this is the easiest and most recoverable one out there. It is hard to take my own advice and roll with the recovery process. I'm doing my best not to get sucked into a pity party. Maybe next week when I get to pick out some pretty AFO shoe's I'll cheer up.

I've also asked around on some baby wearing boards and have some ideas for being able to babywear my daughter, though with most of them she needs to be old enough to support her neck, so it'll be a while. So far she has been rather unimpressed with being in a sling, so maybe my whining is a moot point anyway because she might not want to be worn!

Tuesday, October 26, 2010

My baby girl has been in casts for a full week. Her ankles are already straight! What a big improvement. I've had many questions about what the casts do, and the basic answer is that they help align the calves and ankles to be straight. It holds her legs in position and helps stretch out the tendon that has her legs curling. There is a science behind what angle her legs are held in. When she moves into the Ponseti bar braces they will be angling her feet into the correct position. Actually, they OVER correct because once she is out of the brace there will always be a period where the feet start to turn back inward. Yearly follow up appointments will make sure her feet are on track. So, casts take care of the legs and the braces take care of the feet. That is my understanding of it anyway!

Many of the support forums I am on for clubbed feet have parents who mentioned taking casts off at home the night before an appointment. I made the mistake of mentioning this to my husband, and before I knew it he was unwrapping the casts. It was terrifying to hold down my son while they took a buzz saw to his leg two years ago, so I didn't do a whole lot to stop my husband from manually removing our daughters casts. Here is a video of a little boy getting his spica cast removed... this is the sad baby we didn't have to experience this morning; http://www.youtube.com/watch?v=PLvkUHnXq0A

At our appointment today we were scolded a little bit for removing the casts 16 hours before her appointment. They said that her legs were more stiff than they would have been and that they didn't bend as far as they probably would have had we let them remove it. My husband wasn't in the room, but I explained their concerns to him and I think his plan is to remove her casts manually the morning of her next appointment. I'm making him call in and get permission! I don't like not following doctors orders, and as much as this whole process can be painful/annoying I do know that the closer we follow their outlined planned the faster she'll be done with the whole thing. I'd hate for us to have an extra week of casting just because she isn't stretching as fast as they'd like her to be.

Next week she could graduate to the AFO shoes, or have one more week of casting. How well she stretching this week will determine our fate! I am hoping we'll be done! Casts might be the fastest part of recovery, but it is my least favorite stage for sure!

Saturday, October 23, 2010

I asked for advice on BabyCenter Community babywearing board and there is a mom whose daughter has hip dysplasia and needed to be put in a spica cast at 7 months old. Here is her reply to my request for help with possibly being able to babywear my daughter;

I used a woven wrap and faced out because of the bar on the spica cast. The spica cast keeps the hips in the proper position. Without it, you have to be very careful to make sure the rails are under the legs, and supporting your DD in a seated position. Since it is not as bulky as the spica cast you might be able to use the Pikkolo or Gemini. Those are buckle carriers that can face out in a seated position. Most of the forward facing carriers are pretty bad. I know you can rent them from PaxBaby. Jillian is very sweet and would be glad to help you out. I do have to warn that you need to watch out for overstimulation when forward facing. Jilly used to get pretty fussy if we were in a busy place too long because there was no place ti hide her head and get away from it all.

Steps to wrapping:

1. Safety pin the wrap in 2 places in the back to keep it in place.

2. Pick up the baby and thread the wrap up through the bar and over the shoulders. Make sure it is tight and baby is close up against the body. The straps should be in an X across the front.

3. Cross the straps around the back, in an X across your back. Tighten thoroughly.

4. Bring the straps under the baby's bottom and tie the wrap.

5. Spread the wrap so that it is supporting baby's bottom and back well.

6. Thread a strip of cotton gauze through the center of the wrap and tie it around the baby and yourself to add support to the sides.

Wednesday, October 20, 2010

I get asked where clubbed feet comes from all the time... and based on what I can tell - your answer depends on what your doctors opinion is on where they come from. But from speaking with other parents of clubbed feet babies... I think the real answer is that there is no way to know what caused it.

Clubbed Feet, also known as or congenital talipes equinovarus (CTEV), is a common birth defect effecting approximately 1 in 1000 live births. The root cause for clubbed feet comes from a long list of possibilities, and it could be one or many from the list. The list of possibilities has been broken down into two categories; Postural or Structural. Without treatment, persons afflicted often appear to walk on their ankles, or on the sides of their feet. Approximately 50% of cases of clubfoot are bilateral (both feet). This occurs in males more often than in females by a ratio of 2:1.

Structural TEV is caused by genetic factors such as Edwards syndrome, a genetic defect with three copies of chromosome 18. Growth arrests at roughly 9 weeks and compartment syndrome of the affected limb are also causes of Structural TEV. Genetic influences increase dramatically with family history.

Postural TEV could be caused by external influences in the final trimester such as intrauterine compression from oligohydramnios (deficiency of amnio fluid) or from amniotic band syndrome (ABS). However, this is countered by findings that TEV does not occur more frequently than usual when the intrauterine space is restricted.Breech presentation is also another known cause.

So, there ya have it... some basic information but no real answers. Obviously it's easy to think in my case that we are dealing with Structural TEV because my husband used Ponseti braces to fix his being pigeon-toed (feet turned inward) as an infant/toddler and now we've produced two children with clubbed feet. All things considered, it is still very rare to end up with two children affected - so we should certainly go out and buy a lottery ticket!

Tuesday, October 19, 2010

October 12th 2010 at 1:22pm I welcomed my baby girl into this world. I examined her body as she lay on my stomach after delivery. She was bigger than my son and had the chunk to prove it! Scanning her from head to toe my eyes paused on how skinny and curved her calves were. I looked to my husband, "Could it be... clubbed feet again??"

Yes indeed... we were surprised with a second child having clubbed feet. Once again no ultrasounds had prepared us for this news, but atleast we knew what to expect having just gone through the recovery with our two year old son.

At just 6 days old we started the process. The doctors initial prognosis is both of her feet are

better than our son's left leg, but worse than his right. She's right in the middle! He anticipates 2-3 weeks of casting, then using an AFO brace until her feet are large enough for the Ponsetti bar. I was not familiar with the AFO shoe, but it looks like a little plastic boot!

The casting process takes about an hour for two legs. At first they stretched her legs and feet out to get them as far as possible in order to expedite the casting process. She was not a happy camper during this part! Having been through this many times with my son I was able to remain very calm. Once they started putting on the casting material I was able to calm her down by rubbing her head and letting her suck on my thumb. She slept through the whole thing!

For my son we purchased a pacifier to help him during the casting process. We were not planning on using a pacifier with him, but laying on a table for an hour or more without being able to breastfeed for comfort we felt the need to compromise. Since our daughter is not going to have as long of a casting phase we will most likely make due with her just using our thumb.

Sleeping patterns were immediately disrupted now having the casts on. At even just a few days old our newborn was already having four hour stretches of sleep at night. First night with the casts she was awake hourly. Poor babe just wants to curl up into her comfy position! It is tough, but we know it is necessary. I keep a small rolled up hand towel under her legs in the hopes that it will take some of the pressure off of her hips. Not sure if it is helping, but it looks more comfortable!

I have also found it difficult to put pants on her with both legs in casts (my son only had the left leg casted). We've been keeping her in sleeper sacks for the most part. I might try going up to 3 month clothing to see if I can get the waist band wide enough to go around her legs.

This first set of casts will be on until Tuesday 10/26. It is difficult to keep them clean during diaper explosions, but we do find it easier to keep the diaper tucked as far away from the cast as possible. The hospital provides a cotton batting that shields the cast. This helps half the time... and other times it actually backfires and works like a wick to draw contents from the diaper onto the cast. Ugh. Couple that with the fact that poor baby only gets sponge baths and we'll have one stinky girl by the end of the week! One more reason to be thankful we only have a few weeks of this stage!

Monday, October 18, 2010

September 5th 2008 10:15pm I welcomed into the world my first child. He was tiny and amazing! After our first snuggle the hospital staff took him for weighing and measuring. Across the room I saw two student doctors and the resident doctor examining my baby's feet and making circular motions. I wondered what was wrong with my child and what lesson was being taught to the student doctors. Soon enough I learned that my son had bilateral clubbed feet.

Initially I conjured up horrible images as this diagnosis was something I had only heard of before, but never knew the full compass of just how recoverable it can be. The pediatrician explained to us that there would be weeks of casting to push my son's legs straight and then the use of a brace to put the feet in the correct position. The doctor also recommended we have an ultrasound done on baby's hips so we would have a baseline if issues show up later as sometimes the strain from the feet correcting can do some damage to the hips.

At just 4 days old we started the casting process. Only his left leg

needed to be casted, as it was more pronounced and stiff than the right. We were initially told 6-8 weeks of casting, but he took so well to it that we were done in 5 weeks.

From there we graduated to the Ponsetti bar that he needed to wear 23.5 hours per day until he was 9 months old. It was challenging to care for a "triangle baby" as the braces interfered with day to day activities, but we worked together and found a way to make it through.

At 9 months old he graduated to wearing the brace overnight and during naps only. This was a great change for us! During the day he could work on regular mobility skills and was crawling by 11 months old. By 12 months he was pulling himself up onto furniture and able to do some cruising, but then his mobile development slowed down quite a bit. Just shy of 18 months old he took his first steps and became a regular walking professional quickly thereafter.

Right after his 2nd birthday we had an appointment with the specialists who cleared him of needing to wear the braces. He was all done!! We were very fortunate not to need any surgeries and he went through the healing process in record time. We were so pleased!

At the time of the appointment I was 8 1/2 months pregnant with our second child. On the way out the door the doctor made the comment, "See you in a year for his follow up appointment," and I responded, "Unless this baby has a surprise in store for us like big brother did." Little did I know... we would be returning to the clinic weeks later with a clubbed footed baby girl.

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Welcome to our Journey

This blog is designed to provide information to parents who have children with clubbed feet. I will be outlining my journey with the recovery process with my second child, and providing hints & other tips along the way.

I welcome guest posts if you'd like to share your story. Everyone's experiences are different!